Tuesday, May 29, 2012

My Little Star

I can't believe it's almost June! Where did February, March, April and May go? I feel like Bill Murray in the movie "Groundhog's Day". Each day is the exactly the same with a few differences. Today Matthew and I decided to mix things up a bit. Matthew stood on the base of his IV pole while I pushed him around the hospital halls. The cleaning guy just cleaned the floors so the orange cones were still up. These cones quickly became our targets. Matthew pretended the cones were zombie hats (if you have the app plants vs. zombies you know exactly what I'm talking about) We had a great time crashing into cones for quite some time. I love hearing Matthew giggle out loud!! It's one of my favorite sounds. Matthew is out of CICU and back to his happy little self. We've had a few "issues" this past week but I feel like we are in a better place. Matthew is taking Lovenox shots twice a day to treat his blood clots. His poor little legs are black and blue- poor sweet baby!! He started getting anxious every time the nurse came into the room. We made a sign for the nurses to hold up when it's shot time so he knows when to expect it so he doesn't worry about it all day. I'd like to say it's getting easier but it's not! His cries still break my heart with each and every shot. They tell me he'll need these shots for the next three months. Thank heavens I don't have to administer them myself while he is inpatient here! Another "issue" is that Matthew is neutropenic. His ANC was 400! The medical team is not sure why his white count is so low but decided to start Neupogen shots to help release the immature WBC from his bone marrow to increase neutrophils. So far it is working. The transplant team said that if Neupogen doesn't work we will have to consult with Hematology. I don't like the sound of that so I'm praying really hard that the shots work. Our latest problem is that Matthew's new PICC line which was placed 6- I repeat- 6 days ago is not working properly!! One of the lumen's is not flushing or drawing back. We will come up with a plan for that tomorrow. We can't leave a one sided clotted PICC in Matthew because of the risk for infection. They may try to rewire this PICC or in rounds today the idea of a broviac was casually mentioned. A broviac placement would require surgery to place it. We'll see where tomorrow leads us. On a lighter and funnier note, Matthew made it on the front page of Monday's Deseret Newspaper. Deseret News came by the hospital to interview Matthew and I last week. I think we had way too much fun! Here's the link to the article: http://www.deseretnews.com/article/765579078/Personal-investments-from-Primary-hospital-workers-help-families-cope.html This week is Primary Children's telethon- their biggest fundraiser of the year. They have been prefilming content for their aired telethon for over a month now. Because we have been in the hospital for the entire month and we signed the consent a long time ago, the foundation has been hitting us up for all kinds of pictures and stuff. Apparently Matthew and I are in a commercial which is currently airing and Matthew helped to make a music video. The telethon will be aired on June 2nd. So, please watch to tell me if they included any embarassing shots like me and Matthew running over the cleaning man's cones with Matthew's IV pole and please donate to this fantastic hospital who's physicians and staff have prolonged Matthew's precious life on many occasions. Our gratitude to the physicians and nurses who have spent countless hours caring for Matthew can never be expressed in words.


  1. Congrats on getting out of the CICU. My daughter had her transplant in 09. She had a broviac line. I really liked it for all the medical stuff, but dealing with the changing of the dressing at home once a week was a bit of a learning curve. They really are convenient though - they could never get a good placement for a PICC on her because she was so small. She also had to do the shots. I had to give them to her at home for about a month...that was tough. But, you kind of get used to it I guess.
    We are back in the hospital for a valve repair after three years and it is much harder with a toddler! My daughter has also developed a real fear of all the nurses and doctors over the past three days - between getting IJ and RA lines out and chest tubes out and finding the IV flushes to be painful she is really not liking anyone. The signs are a great idea. We may resort to that!
    That's awesome about the commercial! Congratulations. I hope things go smoothly for the remainder of your stay in the hospital and the transition home. If I can answer any questions or anything, let me know!

  2. I love that story about you and Matthew hitting orange cones! It made me smile thinking about his little giggle. You are such a great mom! It must be difficult to create fun little moments for him when you are so emotionally overloaded. I loved that article too... Sounds like he's in a wonderful place for what he's going through. And you look great in your picture! :) You're all dressed and cute! Anyway, we'll be praying for you as always...

  3. Love Love Love this post!!!! You are such a fun mom!!! I love the IV pole game!!! Sending lots of love, hugs, and prayers :D

    Mason's Mommy

  4. Right? You're lookin' HOT. Maybe there should be a Hot Moms of Primary 2013 calendar. Just sayin'.

  5. Love hearing from you! I think I need to make another visit sometime now that Matthew is out of the CICU. I'll see what I can work out. I hope things get better and better.